It’s been a crazy to think back over the whole arch as we finish the final time point for this trial. I was taken back to when we were first diagnosed. We were given paperwork for a disabled parking permit and Make A Wish and sent home. All the doctors and specialist that filled the schedule while we searched for the answer were suddenly a thing of the past. Everyone knew that there was nothing that they could do for us.
When we enrolled in the trial part of the appeal was in getting to go back to a place where there were doctors that were trying to help. I’ve been nervous to step back outside of that as we wrap up this process. There is an odd comfort that comes from being involved with medical professionals. It’s a false comfort as they weren’t actually treating Claire, but it felt good.
I wish I could better describe the last 10 days or better yet, what we’ve experienced over the last year and a half. All I can come up with is that I’ve changed. Claire’s changed. Jared and Chloe have to. We got to try to do something to help Claire. Three years ago, that option wasn’t on the table.
Today we are on our long journey home from the hospital. Claire is peaceful and proud of what she’s done. Seven years ago we would have never dreamed that she would be able to do anything for herself, much less be part of changing the course for Rett syndrome. Until we started the trial we only knew a Rett syndrome that took.
Today I see the potential for a life with Rett that can get better. The game is changing. I’m not sure what to do with that, other than to keep dreaming. This has been hard but it’s not time to give up. Not yet.
I really wanted to beat Rett syndrome. I wanted to out plan it. I didn’t realize it at the start but I feel confident saying that as I look back. When we signed up for the trial I was hopeful that this could be an empowering experience, that we would be able to soar to new highs as world changers. I wanted to give Claire back some of what was stolen from her with this mutation.
The thing is, Rett syndrome isn’t something to win against. It’s an ever-present part of our reality that frankly makes it much more complicated. I want to look back on this process and see it as a series of adventures but honestly it feels more like a repetitive ass-kicking. That said, I’d do it again, in a heartbeat.
We didn’t sign up to get treatment for Claire, that’s not what clinical trials are for. We hope that this will be part of a process that will lead to treatment for Claire and all the girls in Rettland. Most importantly, we wanted to enable Claire to be part of her solution. We wanted her to feel like she made a difference… and she has.
The best part of this process has been seeing her transform outside of the effects of the drug. Claire has developed a confidence that transcends words. She has a peace about her that stems from doing what she could. There is a smirk on her face as she rolls through the airport terminal that subtly says “you’re welcome world”. She has loved getting to leave her mark and I am so glad that we’ve done it.
I promise it hasn’t been all hard, there have been many highlights and that will be my next post. Today I’m taking a moment to realize that even awesome things, when tainted with Rett syndrome become incredibly challenging. We love Boston and being able to be here but it wasn’t an escape from Rettland, more a change in location.
Yesterday we had a fairly routine visit to Katie’s Clinic for Rett Syndrome. We met with multiple specialist who all agreed that we were doing everything correctly that we could control, which was very nice to hear. Claire got special time with Dr. Mary who is like the Lorax of Rett syndrome, she speaks for the girls. It was her guidance when we were first diagnosed that gave us hope that we could learn to live and that Claire could thrive, I love Dr. Mary. As we prepared to leave we got to looking at old photos, because the awesome volunteers there can just pull up cute pictures of Claire over the last 6 years on a moments notice because they are amazing like that. It was a trip to see her when she was so little and vibrant, before Rett had broken her spirit. It took me back to how hard those days were, when I would feel horrible for crying when she was still smiling because she didn’t see the girls behind her twirling in their dresses. We are so much better now. I can look back and see just how far we’ve all come and it’s remarkable.
We gathered ourselves up but before we left, we had the opportunity to meet a family that lived just over an hour from us. I nearly lost my breath at the sheer joy that exploded from this little girl as she and Claire connected through their eyes. I looked to the mom and could see it, the struggle to breath, the overwhelming grief from the recent diagnosis nearly crushing her. We spoke through a translator and she asked a few questions about Claire. As I looked at her precious daughter I saw so much hope my throat nearly closed and I got goosebumps.
The travel to Boston has been wearing on me. We’ve been in the trial so long that I had lost sight of the why and there she was sitting in front of us, tiny and wide eyed. It’s likely that this girl will have the option of IGF-1 (assuming that the data continues to show what it did in phase 1)before she is Claire’s age. That’s why all this crazy makes sense.
It’s a game changer.
With each generation the story is getting better. Before we were diagnosed Katie was and her parents made a clinic so that others didn’t have to go through what they went through. We have the benefit of the clinic so Claire is making her way through the IGF-1 trial. I don’t know what is coming next but I can see the trend and it excites me. Rettland is becoming a better place, still hellish in nature but the reprieve more accessible.
You know that week when it’s all so much more than you can handle that you just shut down, I’m having that week. Participating in the trial is taking it’s toll on all of us; we’ve been in our new home for a month while construction is almost done; and it’s summer, the absolute hardest time of the year for our family.
With my thoughts in too much of a mess to sort, I have taken to asking Chloe a lot of questions. I worry about her with the high levels of crazy, so asking her questions seems like a good idea. Last weekend we saw the new movie Inside Out, so lately our discussions have been a lot more about emotions.
Twice this week Chloe has sat over her sisters ashen face and sang to her while she waits for her to resume breathing. I waited a little before I asked what emotion she felt driving, would it be fear, anger or sadness? No. It was hope. Chloe went on to tell me how she felt “hopeful that Claire will start breathing again and hopeful that doctors will make a medicine so she can talk”. She was so certain. She knew her sister would return soon and she is certain that treatment is coming. Sidenote: I am dreading the inevitable emotions when that doesn’t happen and trying to relish her innocent conviction.
I hadn’t realized it until she said it, but I had stopped hoping. I was just pushing because that’s all I felt like I had in me, putting one foot in front of the other. Today I am so thankful of the little voice that reminded me to hope. It’s so easy to forget among the medication logs, multiple appointments and constant readiness for seizures.
Today I’m enjoying everyone breathing and remembering that is what gave Chloe hope. I’m aware that my fatigue from travel is giving others hope tonight as they take comfort in knowing trials are happening and progress is being made. I’m hoping with Chloe that the doctors will come up with something because that would be rad.
Can’t believe that I am already sitting here, on the plane, on the last leg of our 10 day adventure to Boston. After all, time flies when you are having fun, or trying to just keep your head above water. We knew that it wasn’t going to be a vacation and it wasn’t. It was an adventure on every level. While we were away I saw this quote from Jon Acuff. When I saw this a giant light bulb went off in my head. This trip is anything but safe and somehow I had been overlooking that. I wanted it to be smooth and easy. It hasn’t been. It has been an adventure, which is what we had signed up for at the start. We enrolled in the trial because I dreamed big enough to believe that with time, there might be a treatment for Rett syndrome one day, not because we wanted to play it safe.
Trials are hard, it sounds obvious but somehow it is glazed over. We signed up for a commitment of over 70 weeks and 7 trips across the country for something that might not help Claire or ever be approved for Rett syndrome. We didn’t sign up for a treatment for her, we signed up for the process of learning and experimenting and we are happy to be doing it. But it isn’t safe and we are at this point very tired.
I wish I had some fabulous update about all of our adventures that went perfectly smooth but that isn’t this story. So here are some of the ups and downs with pictures.
I won’t go into all the boring details of the many mistakes of Captain Awesome and Miss Amazing. But I did get out at the airport at the completely wrong area with both girls and all the luggage so we took the full “tour” of Logan Int’l. By the time this happened it was pretty much par for the course.
We made the most of it the best we could but it was a hard trip. Seeing Claire sick is really hard. Dealing with that not at home is a whole new level of nuts. But that’s why we are doing this. Because what Claire has is hard and it isn’t going to change itself.
I try to embrace the adventure, I really do. But right now, I’m happy to be heading back to the safety of home. It was good. I am so glad that we can be doing this. But I am very tired.
It’s hard to know where to start when it feels so much like the end. Since mid March we have been to Boston 4 times. We’ve spent 21 nights in hotel and given Claire 280 shots. It has been an incredible and empowering experience getting to actively change our world. With each injection, each trip we could sense that bigger things were happening. Now we go into a washout period and with that I’m sad. I will miss the thrill of changing the world. But I won’t miss sleeping in a hotel or sitting on a plane watching for seizures like I have for the last two hours.
This wasn’t an easy trip. We made the most of it. I am incredibly proud of both Chloe and Claire for being stellar travelers and understanding of all of the research protocol. One of the highlights of the trip was going to the Museum of Fine Arts. Claire has always loved looking at things, it plays to her strengths, so this was a natural fit. I was surprised by how much of the art celebrated ordinary, every day life. It was a perfect reminder of the gift that each day is, just as it is, even if you aren’t out there changing the world. Life, as it is is extraordinary. So as we switch from world changer mode to our normal, very rad life, I am seeing beauty all around. At this point my eyes are really too swollen to say much else about the trip. So I will share some pictures from the adventure.
The next few pictures are from our great Cape Escape.
It was a wonderful getaway but we had to go back. Monday before Jared and Chloe flew home we checked another thing off Chloe’s list, the Boston Public Garden and the swan boats.
There was a lot more not pictured. We got the pleasure of meeting up with another family that was in the study. We had a lot of fun meals. On the last day my eyes were puffy from crying and Claire’s were from seizures and congestion. It was an amazing adventure. I am glad that we had the chance and I hope that in I get to see the fruit of it in years to come. For now it’s back to normal life in Rettland. The adventures to Boston will resume March 2015 when we return 3 more times for the rest of the trial.
We’ve made it a long way. We pushed and got to the airport with a few minutes to spare. We are now on our 4th trip to Boston within 5 months, I still can’t believe it. We’ve learned a lot along the way. We scheduled in a lot more margin this time. We started packing earlier, asked more people for help and were very intentional about making sure that Jared and I were laughing together and staying on the same page. Somehow, even with everything going smooth by our standards, the grief snuck in and hit me hard, right in the gut. It’s not fair that even when everything is going well, still it is so hard that it takes your breath away and makes you feel like you have to puke. After much reflection I have come to a simple conclusion. That is because it is hard, really hard. Support from friends helps. The peace that I get from my faith goes a long way. At the end of the day, this is hard and those thing make it manageable but nothing can make this not hard.I knew when we signed up for the trial that it would be hard. I knew that we would drain our bank account with the cost of travel. I planned that there would be a physical toll on all of us. What I never could have seen was the heartbreak I am feeling right now as I sit on the plane next to Claire as she contentedly watches the Muppets. I signed up for this trial because I knew that everyone has to start somewhere. Much like the first planes didn’t fly, I had very low expectations for this treatment. Due to the sensitivity of the research I can’t say much, but I have checked with the team and I can say this. While I can not be certain, I do believe that Claire is on the drug and it is devastating to know that we can only give her these shots for another week. This is a whole new level of hard.
I’ve been to conference and spoken to doctors about the future of Rett Syndrome and the response has been, “not if, but when”. For us, the when is now. I live in a world where I can give Claire something that helps. Soon our when will become a “back then.” I don’t know what will happen when we stop the shots. Research will keep on but I don’t know what Cliare’s brain will do without whatever was in those little vials that we are giving her. This I do know. I am so glad that we’ve made these sacrifices and got a glimpse of the possibilities. After all, don’t think there’s ever been a better time to do the hard stuff than now.
It is the last day of school and I am buckling up for what is about to be one hell of a ride. It’s already been a long week. Claire sobbed yesterday morning at the discussion of going to Boston. The initial excitement is gone and now it just feels like she is getting shots and missing out on fun with her friends while she is out-of-town. Add to it, she sobbed. Typically, when she gets this emotional she has a seizure and falls into a deep sleep and I don’t have to address the issue of how hard it all is with her. I can yell at God, cry into my pillow and get over it while she rests. Not this time. She was so present, so regulated and still tormented by her reality. It was one of the hardest things I’ve gotten to deal with yet, my child sad that we have to go back to the hospital. We cried together and eventually the Beatles brought the smiles back, she is a sucker for All You Need is Love and Hello, Goodbye.
With both the girls at school I got about my business and tried to make a rental car reservation for our time in Boston. I was doing well until I discovered that the airport locations were sold out and the sketchy companies that had cars were charging three times over what is normal. That is when I broke. My mind swirled with the million things that need to happen before we leave at noon on Friday. Laundry, cooking, reservations, bills to be paid, work for the foundation, I need to shower, packing for the two trips and the overnight that Chloe will have so that we can leave by 5am on Monday morning and all I want to do is curl up with a basket of onion rings and sob.
I had nobody to cook for me so I pushed on and so glad that I did. Great things are happening with the Rettland Foundation. When I am not overwhelmed and watching the world swirl around me, I am overjoyed at the awesome that is about to come from our little project. I say all this not to complain or brag about what we’ve accomplished. I say this to ask for help.
You see, I know that we are at the end of our rope and we are not even half way through our marathon. We need a little help from our friends, the Beatles can carry us for a bit but we need help. Between now and the end of June our little family of adventurers will be managing more than we normally do and it is hard, really hard. If you have ever wanted to do something to encourage Claire or Chloe now would be a great time. They are both so brave and take on so much. As always your comments are appreciated, reading them in the hard times goes a long way. We are adventuring out to where it can feel very lonely, the reminders that we aren’t alone really mean a lot.
If you love somebody else out there in Rettland, remember that it isn’t just the big trips that are hard. It isn’t just the hospital stays or extra appointments with specialist. It is whenever there is a series of waves closer together. When you have been treading water for this long, just a few extra small waves can be more than you can handle. Be gentle, be supportive. Thank you.
We are in an amazing place right now. It is rather surreal and I often look around and wonder how we got here. As I had coffee with a friend yesterday and shared some of our stories from the trip to Boston it dawned on me the size of our adventure. Her jaw dropped as I told her that I took Claire to the Red Sox game by myself. I’ve had that reaction from a few people. It honestly never occurred to me that it was a crazy decision until I saw people’s reaction. Looking back, I can see the risk, I can see all of the things that could have gone wrong. In the moment I didn’t see it as a choice, but it was. I could have chosen to sit in the depressing hotel room and to cry but it just didn’t seem like an option. I had enough of that and we were ready for life. Really, aren’t we all and maybe we just don’t know it?
I suppose it is the silver lining of living in Rettland. There is little mundane. Everything is sink or swim, fight or flight, there is no room for maybe. In a way it saves me from slowly slipping into that dark hole of bad choices. When the decision is between treatment for RTT or not, the decision is obvious. When the choice is to let uneducated people determine critical things for Claire it is obvious, I advocate, I educate, I cannot let her life be compromised by the system. In that process I bring all of my being because that it what it requires, anything less and Claire could be in danger. When I do this the payoff are huge. When you push and fight for it, the day that it comes sends you over the moon. It isn’t always because it is a big thing but because of the work that went into it.
It is an odd privilege to have so few things that are mundane but it has led me to such a beautiful life. The smiles are cherished, the flowers are smelled, the laughter is loud and the stuff that doesn’t matter as much just never makes it to the top of the list. We all have lives with this much beauty. I was pushed to see it because my only other option was a dark hole. Wherever you are in Rettland, I hope that today you get to fight for something and that you get to see beauty that surpasses what you expected.
It caught me off guard. I had been so wrapped up in keeping Claire alive that I had completely forgotten about the trial. Friday we raced around to unexpected heart checks and to the pediatrician for the ear infection that was driving the seizures and vomiting. Saturday night I was just glad that Claire could hold finally hold her head up on her own even though we still had to give her liquids with a syringe. Monday I was glad when she could take a few steps before collapsing in exhaustion. Tuesday I was deeply relieved to have that small spark back in her eye and that gentle smile that hides most of the time. With those two things I was content.
You can imagine how I was caught off guard. Claire’s blood sugar was a few points above the number that we call 911 at. I fed her gummy bears and waited to check again. I played it cool for the sake of the girls. A friend came over to talk to Chloe while we hung out in the car. That is when it happened. Claire looked left when this friend asked her about Boston. Looking at people when they say hi is a challenge on a good day, turning left to do this is a huge feat. I stood there watching, my brain watching the clock as I needed to recheck her blood sugar and my heart pounding as I couldn’t believe my eyes. She was free in that moment, to turn her head, to smile, to express herself right away while the other person was still listening, it was surreal, pure, unexpected joy.
I had prepared to get the placebo first. I had prepared for the drug to make little to no difference. I had not prepared to see Claire a little freer. I don’t know if we are on the drug or the placebo. I don’t know if the moment of freedom was the result of the antibiotics or the 24 hours of sleep that she got over the weekend. Maybe she just got a good nights sleep. It doesn’t really matter. Yesterday Claire was free to express herself a little more than she normally can and somehow I was coherent enough to notice. It was the reminder I needed. The reminder of the high value of the small things. Sometimes it is learning in school, playing with friends, putting in hours of therapy or injections of a mystery substance. We are doing this because a little difference can change the world.